Morning has broken

And so turns another day, and it's not starting for me as I'd like but there's not a lot I can do about it. All last night I spent awake and gave up trying to sleep at half six. I'm fairly used to getting not a lot of sleep but I hate getting none, and I'm sure I'm not alone. What's going to happen during the day as I go about my usual things is I'll suddenly need to sleep and I'll lie down and sleep like a pup for a couple of hours. The knock on effect of this is that I won't sleep tonight either and the vicious cycle begins. I could go days and days like this or I could figure out some way of breaking the cycle early. I need to get through today with enough rest and be jaded enough tonight to sleep.

I'm sure the doctor could give me something to help me sleep but I take enough meds as it is and any more would just confuse me, and I could do without being confused any more than I am. I don't like taking heaps of meds, I've heard to many nightmare stories of kidney and liver failure in later life from people who ate tablets like sweets and when I die I want to be in the best of health.

The other option is to get blind drunk but as I don't drink then this option is also gone out the door, and I don't use drugs so I can't get stoned. I'm not likely to get in a punch up (although I'd never totally discount it) so I can't get knocked out. I could of course watch The English Patient, that'd put me to sleep any time, but I can't be bothered to go to the DVD store.

There's the notion of course that reading could send someone to sleep but not me, when I start to read anything I go into a world of my own and I have to finish what the writer has written, and the furthest thing from my mind would be sleeping. If someone has gone to the trouble of writing something interesting enough to have me start reading it then the least I can do is finish it. I can sit and critisise the writer to my hearts content and not even leave the room. I can also gasp at the writers ability to turn words into dreams. That's the great thing about books, it open doors to great minds and ideas that entertain us and challenge us and make us stand up and think. I've had lots of debates with writers, some of them have been dead a long time, but that shouldn't stop a good debate. I think I might wander down to the library or a bookshop and see if I can find a little gem to keep me entertained for the day.

Tonight I'm off to a birthday party in Limerick so I'll have to rest all day so I'll be able to go. No sleep mixed with C.I.D.P. is really going to wreck me but I'll power through with the help of a good book, or even a bad one, and I'll be the better for it tomorrow.

Hi gang

I know it's been a while but there's a good reason for tthat, nothing has changed much. I started this little blog to let people know what it's like for me to live with C.I.D.P. and for now it's just the same day in day out. I don't mean that in a way that my life is boring or anything, exactly the opposite, I have a ball every day. I mess around online, I play my guitar, I cook, I cook some more, and if there's any internet hounds out there you'll know I've started a little business, it's still very much at the green shoots stage but I'm giving something a go. Walking a distance is still a bit of a problem for me but I get by, and I have a car anytime I have to go anywhere.

I've never sat and thought about what to write, I just sit and type but when I've really had nothing to report I didn't see any point. Fishing stories are for another type of blog and if anybody wants to know about any of my new recepies they can message me or ring me or wharever. My music is another story. I'm back playing an odd gig here and there and that's all good, next week I'll be in Ennis to hear and play some traditional Irish music. It's good to be able to do all of these things and the reason I can is because the people around me didn't stop caring, my wife, my daughter, my parents and my countless friends (you know who you are). It's because of these people that I'm able to cope with this thing that I got and that's why I have nothing really to report. I'll still blog away every now and then but for now thank you all for giving me nothing to write.....xx

It's later that I'd like

Sometimes I want a good night's sleep. That might be really obvious to a lot of people but for me it's different. My whole body twitches sometimes all night and on nights like tonight I just can't sleep because of it. Tonight I'm really tired and I could do with drifting off into lala land for eight hours but my CIDP says no.

I'm pretty used to this by now and I've learned to catnap during the day when I need to, and I do try to do as much as possible to wear myself out everyday so by the time midnight comes around I'm so tired nothing would keep me awake. The thing about tonight is that I spent the evening playing music in a local pub and now I'm buzzing from it. Most musicians will tell you the same thing, it's hard to switch off after a show and winding down is always a problem, so combine that with twitching nerves and muscle cramps then I don't really stand a chance.

Lately I've been doing pretty well. My walking is getting better in the middle of the month and I haven't needed my wheelchair in ages, so long in fact that I'd have to check back on several social network sites to give an exact date and I'm far too tired to do that. I wish I had some dramatic tale to tell but I havn't. Having CIDP and living with it for me is all about having a routine and doing the same things day in day out so everything is measured. This isn't such a drag really, it'd be a lot worse if I set off to do something alone and found out half wat through that I run out of steam and end up stranded, so I stick with what I know and leave anything new I want to do for a time when there's someone around to rescue me if I do break down. I've managed to go on a few bike rides recently and when I come out of hospital next week I plan on doing a whole lot more. It's one of the things that I thought I might not be able to do again but I can and will. I guess that's what keeps me going, all the things that I used to do that I thought might be too much for me have become daily chalanges for me. When I decide I'm going to do something I have to work out how I'm going to do it and if I fail, what are the consequences.

I don't know if any of that makes sense to anyone but it all works for me. It's half three in the morning and I'm still wide awake but really tired and I may be rambling a little bit.

My next big target is to be able to cycle to the river with my fishing gear, spend some time there and cycle home. I'll be testing that one on the 16th of August. I might crash and burn or, if I do my homework and stay a bit focused, I might complete it and then it'll be another thing that's measured and it will become part of my routine. When that happens I'll find a new challenge and so on untill I can do all the things I want to do or know for sure that it's beyond my ability. Some people have warned me that I'm setting myself up for failure because I'll only stop trying when I totally fail, but I'm not going to wrap myself in cotton wool and hide away and if I crash and burn while trying to do something then so be it, as I always say "a bit of pain never hurt anyone".

Suffer for my art...??

I know I should be spending a bit more time on this blog but my typing isn't always up to scratch and it would take me ages to even write a little bit. I was in hospital last week after a good month on my feet, I don't think I was in my w/chair at all in fact but I couldn't be 100% on that, I think my memory is shot or maybe every day just blends into the next day and I'm never really sure where I am either way I had a good month and felt great. Last week when I went in I still felt pretty good and for the first time I walked into the hospital instead of using the chair, I felt a real sense of achievement.

My treatment went well as always, I'm one of the lucky ones, I know some people who have a real hard time with infusions. The team of doctors are all happy with me as well and might stretch my time out of hospital from four weeks to five.It'll be good to spend more time at home.When I came out though I felt awfull for a few days, I don't know why but I just did.

As most of you know (or maybe you don't) I love playing my guitar and singing and I want to do a whole lot more of it. I recently went to see my old buddy Frank Turner and it reminded me of why I love live music so much. The whole room was full of energy and fun. Everybody sang together and danced together and there wasn't a cross word all night. Another thing I noticed was that there wasn't a single person there drunk. I've often said that about live music, it really isn't the home of a drunkard. But I digress....

I want to start playing some gigs again so I need to be 'gigfit' to do that and the best way to do that is to spend as much time on my feet as possible and this isn't always as easy as I would like. The thing is that the more time I spend on my feet the fitter I get but also the more time I spend on my feet the more pain I'm in the next day and the day after that. It's a bit of a mathematical nightmare.

I've been spending a day a week in Cork City. The city centre is flat and there are some great coffee shops to drop into to have a rest, and I like coffee, see it all fits. I was there yesterday and decided to wander out past the Mardyke as far as Wellington bridge, it's only about a mile and took me just over two hours, it was my Everest for this week (everyone should have an Everest every week, even if it's only a speedbump) It was a nice walk, when you have to walk slowly you get to see an awfull lot of things that you'd normally miss. My lift picked me up just by the bridge and I felt great. Last might I didn't feel so good and couldn't sleep because of the pain and twinges and twitches, so today I'm in pain all over and feel like I've been living in a skip for the past week.

I have to stay active or I'll crack up and if that means I get a few sleepless nights then so be it. I want to be able to spend a few hours with my guitar and a bunch of friends and play some music and the only way I can do that is by getting some way fit. I'm sure it'll all be worth it in the end, if not at least I'll have lost a little weight.

It's far too late for all this

I really should be in bed but I'm on the couch typing a blog at two in the morning. I've always said that I refuse to complain or grouse about my condition and that hasn't changed, I just want people to know how it creeps up on me when I least expect it.

The other day I went fishing, I go as often as I can because it's not far to the bank of the river and once I'm in the river, wearing chest waders, I find I can walk really well because of the bouyancy. Normally the day after my legs feel better and I can get around a bit better, but not any farther. The other day was no different right up until I had to walk back to the car, I thought it would be the same as always but I was wrong. Every step I took I thought would be my last, every ten yards I had to stop and rest, this was more difficult because feilds aren't level. When I got back to the car, which was parked only fifty yards from the river, I was really on my last legs.

This is what happens every month, I think I'm doing well and my walking gets better and all of a sudden it's all gone and I'm back to square one. This is why I can't sleep now, because my whole body is twitching and spasming and cramping and I know I'm well on the way down.

Now normally I'm a fairly happy sort of a person but all of these things really get me down, not in a 'oh my god I can't cope' way, more of a mental fatigue kind of way , where it's almost too much trouble to think. Even right now I'm finding it really hard to concentrte on what I'm doing right now, my eyes are heavy and my limbs are sore, I feel hungry all the time even though I eat like a horse. I seem to get abdominal pains for no aparent reason, so no matter what way I lie down I can't get comfy.

I feel like I'm blathering on about nothing but right now I'm really tired and keep losing my train of thought. There are some things that are harder to get used to than others and right now I can't remember wheather or not I felt like this last month, but I reckon I must have. I really should re-read my blog sometime and see if I can timeline these things.

I'm back again in the land of the walking upright people, in hospital I see most of my room mates lying down or at best sitting. I've been feeling a bit better this time around for some reason. Maybe it's all the meds and the physio working in sync or maybe I'm just feeling good, who knows, I asked the doctors and they don't.

Because I was feeling a bit better I decided that it was a good time to test my endurance, this is never a good idea when I'm on my own but I'm not one for doing things by halves. Across the road from the hospital is a shopping center and in the middle of it is a coffee shop, not a great coffee shop but it would do for now. My mission was to walk from the front door of the hospital to the coffee shop with just my cane without stopping for a rest. To make life a bit more difficult I had to carry my shoulder bag, full of a weeks worth of washing, and my laptop, total weight 14 pounds.

It all started off okay, the ground outside the hospital is fairly level, and every step coaxed another one and I developed an early rhythm. The footpath then sloped away from me so I had to adjust my gait to compensate, this caused fatigue in one of the muscles and it all seemed a bit too much all of a sudden. I of course kept going, I could have turned around and waited for my lift at the hospital but I didn't. I gathered my strength and ploughed on down to the main road and hoped for a red light at the pedestrian crossing, that way I'd be able to rest. This of course didn't happen and my way was cleared by several little green men. I've waited 41 years for this to happen, a green light all the way, and when it does happen I'm begging for a red light in my head, is that irony? I kept my back straight and put one foot in front of the other and ploughed on slowly.

The entrance to the shopping center was about a hundred yards from the road, downhill on a footpath through the car park. This ment total concentration and the possibility of being hit by a car, Cork shoppers are not good drivers. This was going to be a tough leg of the journey, made tougher by people handing me advertising pamphlets and money off vouchers, I took the deals and ploughed on one step at a time keeping my focus on the door.

When I got to the door I could smell coffee, I can get a whiff of good arabica a mile off. There was a lot of people on the mall. At this stage I'm really in a lot of pain and my legs are nearly gone to sleep. I have to avoid being knocked sideways of I'd fall, the slightest touch would do it. The thing about my epic walk was that it had to be a walk and not a limp or a hitch or a leg drag and so far I was walking so again I ploughed on down the mall and turned into the new section and saw my target, the not so good coffee shop. One careful step at a time I got closer and closer until finally my legs refused to take another step and I had to stop, that was it my muscles were spent and not one more step could I take until they recovered. I flopped onto a bench and felt gutted. I counted the 12 inch floor tiles between my bench and the nearest chair in the not so good coffee shop and there were 14 of them, that's fourteen feet between me and a not so good cup of coffee, the distance between happiness and blind despair...for anyone who wanted to know is just fourteen feet.

I sat there and thought had I done too much, and how long it would be untill my legs recovered enough to carry on. I realised how luckey I was that the shoping center had benches scattered around or I would be on the floor and unable to get up. All the time I kept counting the floor tiles and watched the whole world take sub standard coffee while I sat and stewed.

It was an hour before I could walk again and I headed for the shopping trollies and took one to act as a walking frame and to carry my bags. I still felt bad, like I had failed miserably, even though I knew there was nothing I could do to change anything I still felt awfull. I turned back to the not so good coffee shop and out of the corner of my eye I spotted another coffee shop that I never knew existed, that's where the wonderfull aroma of arabica was comming from. It was a good coffee shop and miles better that the not so good one. Was this some kind of fate working on my behalf, did some celistial being decide that I deserved a good cup of coffee for my efforts. I'm not a religious type or even very spiritual but I reckon the great god of java was looking out for me that day and knew I deserved a decent cup of coffee.

So what did I learn from this little journey. Well first I found out that I can walk farther than I used to and second, a good cup of coffee is worth waiting for.

This time it's war

It seems like ages since I sat and typed a bit, it's longer than I planned. I wanted to keep this blog as a regular part of my week but things get in the way. Nothing dramatic, just normal stuff that everyone has in their life like family and friends, I feel it's more important for me to spend time with them rather than hiding myself away and tapping away at my laptop like a hermit. Today is a good example of that, I'm batch cooking for the week so my wife can come in from work and everything will be ready, I can sit down now because I'm just waiting for the chicken to finish. On any other day people phone me or call by, and I love when people do both, and it's kind of rude to start typing when they're in the room, especially if they brought biscuits.

This week a buddy of mine brought me some duck eggs so we had some poached on tuna for lunch, I'll take that any day over an hour of typing. The same day another old friend called by and we'll be fishing the local rivers real soon together. A friend I shared a flat with in Cork years ago came by and sparked an interest I have that could well lead to a bit of a job. Also a kind soul bequeathed a van to me so a bit of my time had to be spent on that. What I mean is that as much as I love doing this blog my family and friends are more important but I reckon you all ready figured that out.

I've been spending a lot of time recording as well. I got a lot done during the week so I'll have a lot of editing and mastering to do in hospital. I try to record as organically as possible and not use electronic trickery to polish the tracks and that can be very frustrating and time consuming but I like the finished sound, to me it's an honest sound. Not a lot of people agree with me so I'll never go platinum any day soon but I like what I like and don't see why I should compromise just because the big record companies do. I'm not a record producer or anything but I like recording songs and let the lyric come across and not crowd the melody so the listener can really hear what the songwriter wanted to say.

I'm back in hospital on Monday but I'm not feeling too bad, I think the new physio I'm doing has helped a lot. The relapse this time around hasn't been as severe as it has been in the past so I think it's time to declare war on my C.I.D.P. I'm not so stupid that I think I can cure the damn thing but what I am going to do is increase the physio and the general daily demands on my body to see if I can improve my mobility during the month, because to be honest being in a wheelchair a lot of the time is a bit of a drag, and my daughter keeps threatening to bring me up a hill and let me go if I don't let her shop, and she likes to shop.

I've set myself a target that the physio in hospital reckons might be beyond my range but she's only got four years training and another 12 years on the job experience, what would she know..I might be setting myself up for a big disappointment here but here's my target.

I want to walk from my house to fountain in town and back totally unaided and walking properly all the way, no limping or hyper extending allowed. To most people this is a stroll and no problem but for me it's much farther than my two hundred and seventy yards with crutches limit. I think it's a reasonable target, I'm not sure exactly how far it is and I don't really want to measure it in case the figure scares me off. I want to do this within the next month. So before I go back to hospital next time I want to have walked that distance. If I can do that then I'll raise the bar the next month and if I can't then it's back to the drawing board, and if I totally break down my doctors in Cork assure me they can fix me. I'll try and keep a record of things as they happen to me and I hope my friends keep calling and encouraging me, because without my family and friends I could do nothing.

sometimes I'm fine

This week has been a mixed week. It seems one day I feel okay and the next I feel rubbish. I don't really know why, my normal routine hasn't changed all that much. On saturday I felt really bad and to make it worse I was stuck inside all day and I really wanted to go out, every time I got ready to go the clouds would blacken and the rain would drop down as if it was mocking me. I don't mind rain normally but rain on a wheelchair when I'm in a bad mood would be a serious no-no. After putting my power-chair away and taking my coat etc. off the rain would go and the sun would creep over the clouds tempting me out again, and I fell for it three times before I gave up.

I turned my mind to do a bit of recording and again my plan was turned inside out. The mic and laptop were set up and my recording program was ready to go when a good friend called by, not that I wasn't delighted to see him and his wife but it threw my train of thought for a bit. When I did get back to work, after they left, some rotten little brat outside my window had found a stick and a can and spent a half hour or more hitting one off the other up and down the street. I'll never chastise a six year old for having fun so I just sat there and waited for him to finish, I'm just glad I live in a place where kids that young can still play safely outside. Then I got a brainwave, seeing as my mic was picking up hie stick and can song then maybe I should record the sound and use it in a song. I opened the window, put the mic up, hit record and the little brat stopped and followed the sound of his mum instead calling him for supper, I was beaten again. I get days like this, I reckon everyone does, I just try to grin and bear it.

I did a bunch of physio earlier in the week and as much as I enjoy excercise and sport, this really knocked me on my backside. The kind of physio I do is supposed to do this so it was no surprise, but when I was feeling bad to start with it was difficult to get my head straight to do anything else constructive done. I got a bit of recording done but it was crap so I binned it. I wrote some lyrics and they weren't much good for anything I'm working on now so they got filled under 'later'. I did cook some pretty good meals but I kinda have to eat and I like good food, fresh and seasonal.

The week wasn't a dead loss or anything but I feel I could have done more. Last night I went to a Rambling House session in Colemans Well and sang a few songs. I'd never done a rambling house before and I can honestly say I had a ball. I heard a bunch of songs that I hadn't heard in years and that's never a bad thing. I'm going out tonight to play a bit of music so this week is starting good and I have tickets for Mick Hanly on saturday night and that's going to be great. So it's a case of roll on the summer and bring on the good times.

There's always the memories

I'd really love to be playing live music every night. I think most people who play an instrument would say the same, there's no feeling like it in the world that people will allow you to express yourself through the medium of music and sit and listen. Jack Black said it in one of his movies, it's all about playing one great show. The one great show can be different for everyone and it's certainly differert from a performers point of view than an audience point of view. I've known bands and musicians to say that their greatest show was in front of very few people and of course a lot of music lovers will tell you that the nights they remember most were at a small venue where nobody turned up but the few who did had a great night.

For me though the show I remember the most was with the bamd All the Presidents Men. We were booked by Southampton Uni to play a mixed show with another couple of bands. Everything was on time and really well organised and the venue room was great. We hit the stage and played the usuall three chords we'd been knocking out at every show but for some reason or other everything felt great that night. I remember my microphone stopped working for a few seconds so I just shouted the lyric and the audience joined in 'till the sound tech got it sorted. Nothing that could have gone wrong that night would have stopped me from having the time of my life. There was the very wonderful Laura who was forced onto stage beside me to join me in a song which was great, and every time I visited Southhampton we've done the same, and we will again. The crowd cheared and sang and danced, everyone had fun and we all went home nice and safe.


Everyone has a great show or great gig memory, mine was that night in Southampton. I plan on having a lot more nights just like that one and the only thing that can stop me is if I really believe that night's like that are just memories, nights like that can just as easily be dreams and wishes.

It's been like ages man

I've been doing a lot of recording this past couple of weeks. I got a new recording microphone and I'm spending hours on end trying to get songs that I like recorded. Things don't always work out the way I want but that's okay because every time I make a mistake I learn from it and hopefully do it better next time around.

The main reason for spending my days with my guitar, laptop and microphone is just to try and be some way creative. I promised myself a long time ago that I wouldn't ever sit at home and feel sorry for myself and there's not enough rugby on the telly to keep me busy all day every day. There are times that I can get so annoyed with the whole process that I'm fit to be tied but that's okay too because if I didn't get annoted once in a while I wouldn't be human.

I can sit all day and get tangled up in a song and never be happy with the way it comes across and erase everything that I've done that day, and sometimes I can get it in one take and it feels like pure gold. There's people spend years trying to get the perfect recording and drive themselves mad doing it but that's not what I'm trying to do, I just try to fill my day's the most creative way possible and this is my current outlet. My favourite way of making music is still playing live, there's something about being in the room when the music bounces off the walls and an audience sparkles when they hear something they like and their eyes light up. Not every night is like that, as any singer will tell you, but you have to leave the not so good nights behind and think about the next one.

I'd love to play live more often but I can't commit too far ahead and even at that I could wake up any day and not be able to use my hands and would have to cancel on the day and I never want to do that. I've been offered a couple of gigs and I'll probably play them as the people know all about my condition. For now I'll keep recording in my front room with the wind outside joining in and the rain against the window keeping time and when the time is right I'll go and play some shows and maybe see some of you guys there.

Just like buses..

Some people wait for years and never meet one. I always knew I would but I never knew when, and then out of the blue last last Monday I met one. I've been wanting to meet one for a long time now but the opportunity never really presented itself. Of course it's never how you imagine but it really wasn't a let down. I kind of drew a picture in my head of what it would be like, and added a little script as to what I might say but it didn't turn out anything like that. Yes folks after all this time, and all the waiting I finally met another person who suffers from the same condition as me.

I arrived in hospital last Monday and was put into a room for two and my room mate for the week was a fellow sufferer. It was fun, we traded stories and had a laugh about life in general and swaped DVD's. It's nice to know you're not alone sometimes. We had the usuall straem of med students in and out all week. They would sit with one of us and go through their usuall questions, every time they would comment on how rare CIDP is and how unlikely they were to come across another one, and then they'd sit with the other one of us and couldn't believe their luck at seeing two of us at the same time. This of course led to the "2 bus" joke over and over again, still they're med students, they don't get out a lot.

It was a good week all the same. I spent a lot of time playing around with a programme called Cakewalk, which is basicaly a way of writing and recording music just using my laptop. It's fun to do but for my money you can't beat playing real music with real instruments and a bunch of friends, but more of that later..

to tell you the honest truth

I can't fly. What I mean is I am unable to fly, it's not a medical thing, there has been no letter from the hospital to tell me not to fly, it's just that if I run along a runway and flap my arms then as far as I know I will not fly. I'm so sure of this that I'm not even going to try. It's just a fact that if I do jump in the air then the pesky gravity sucks me right back and reminds me of some basic laws of physics that I may have forgotten.
I can almost hear the foreheads being slapped as I type but it's things like this that remind me that nothing is impossible. If Mr.Wright and Mr.Wright had said that and left it at that then we would never know what other countries were like or we would have never found out that clouds aren't made from candy-floss (though I still reckon they are)
I was at the Irish Wheelchair Association center on Monday and it was like somebody gave me the keys of a kingdom. It's a wonderful building on the edge of Mallow town with brilliant facilities for disabled people. I was in the gym in my w/chair and was champing at the bit to get on and use everything in there. Now what has this got to do with flying? Well nothing really other that the thought that I had sort of given up on sport, as a player, but I never really said it out loud, I just sort of carried around the idea that me and any kind of competitive sport were well and truly over and I had more chance of running down a runway and taking off than I had of being able to play a sport again. It got me down a lot because I let it get me down and I couldn't have been more wrong if I tried. There is of course almost as many sports for disabled athletes as there are for able bodied and I really have always watched the paralympics with as much enthusiasm as any other sport I watch, but I really thought that because of my condition and the fact that I'm over forty (I know, scary) that it was all behind me.
While I was in the gym I got a phonecall, somebody wanting to know if I'd like to play w/chair basketball and rugby, of course I said yes and I'll be starting training on the 23rd. A short time later I got another call and I've been asked if I'd like to try sailing, not just the paddle around the shallows type of sailing but full on sonar racing, needless to say I'll be hoisting up the mainsail on that one very soon. Today a man called to see me and he wants to put together a w/chair archery group to compete in both disabled and open competitions, all I could think was where can I get a bow to start practicing.
All of the above happened inside a couple of days. I woke up on Monday morning feeling rubbish and having barely slept and really feeling sorry for myself. I fell over trying to get dressed, I had to crawl down the stairs and my hands were cramping up all day. I went to Mallow and got a couple of phone calls and I feel like I could take on the world. All the things that I was feeling miserable about were taken away by a couple of strangers phonecalls. Tonight my hands are still cramping up and my legs don't work at all but I feel good and can't wait to get on a court/water/field and do some of the things that I thought I never would. Now where's the nearest runway, I'll give it a go anyway.

And I did it all again.

There's a lot of firsts for Me. Well not really firsts, I suppose you could call them agains, but they're firsts since I started feeling unwell. There was My first steps and the first meal that I fed myself, the first time I managed to walk up a stairs, which My daughter got on video, and the first time I could play my guitar.

The other night was another one, I went to Bennis's Pub in Ballyagran and played music all night, well at least until the barmaid said it's time to go. It was a big landmark first for me because I didn't know how long I could keep going for until my hands or fingers give up, or if my lungs could push out enough air to be audible when I sang, and now I know so I plan on doing a lot more of it. The next morning I felt like I'd done ten rounds with Tyson, and that's a lot of golf, but as the day went on I recovered well enough to be able to make coffee and eat buns so that's a result to Me.

I can't think of anything I'd rather be doing that knocking out a bunch of songs with friends and good people around, it's my little escape from the world. A simple three minute song can stay with you for life and bring out emotions and feelings that you might have thought were long gone. I have loads runing around my head most of the day. If somebody hears a track on the radio that was a hit when they were at school more often than not they're snapped back to a school disco for a split second, or maybe a memory of a first dance.

I'm always looking for new songs to sing and play, I'm not too keen on playing the same old sing-alongs that a some musicians rely on time and time again, there's nothing wrong with those songs, in fact they served Me very well when I was a gigging musician, but these days I like a bit more of a challange. I like to reach out to an audience and offer them something that they might not have heard before. Another thing I do is not to use a playlist and this drives other musicians mad. I just shoot from the hip and hope everything works out, and mostly I believe it does.

I write this blog the same way, I don't plan what I'm going to write and I never edit before posting, sometimes I even forget to spellcheck it, I just type and post and hope it doesn't come across as a pointless ramble. I started this blog to let people know what it's like living with CIDP and because it camn be such an unpredictable condition I don't think I could plan a blog, because in the time it takes to plan something then my condition could have changed and I'd have to start over. In saying all that I've never been one to plan anything really, because when I have then there always something or somebody who I trip over and my well planed plan ends up being a 'what if?' memory, so I just keep going with a vague idea of where I want to end up and hope it all works out. In the words of a great songwriter, Seasick Steve, "I started out with nothing and still got most of it left".

I was talking to the greatest bass player in the world, Pete, this morning and we want to do some recording soon, and the phonecall ended with the idea we'll either record in England or Ireland or Wales at some time in March or April or some other time that sort of suites us both, and there would be some fishing involved if we end up antwhere near a river, lake, stream, or the sea. I have every confidence that the recording will happen and we'll have a ball, so worrying about trivial things like times and dates would only cause a distraction to the end product. I've often gone on stage with Pete and him not know what on earth I'm going to do next but he never gets phased and can rely on a massive amount of experience and talent to get him through the gig, while all I have to rely on is the solid bass player standing beside me and a drummer, also called Pete, who is ice cool and brilliant. If it wasn't for them I'd probably sink like a stove overboard.

So to conclude this little piece, I will more than likely, if everybody concerned can make it, if it's at all possible, maybe be able to try and be more definate in the things I'm sort of planing in a sort of a vague kind of way, play a bit more music more often than I have been as long as my battered body holds out and I have at least one person that wants to hear me.

everything comes to those who wait.....for me!

Well to be honest it's been a rough couple of weeks. I came out of hospital and did all the things that I really shouldn't and here I am paying the price for not listening to the doctors. I don't like being stuck in a chair all the time and having to suffer all the pain and discomfort every time I want to make a coffee or make some food. I should be breezing around the house now but instead it's like one step forward and two steps back and then fall over. I plan on having a quiet weekend though and get out of the chair for a few days next week, but I don't know if it's going to be possible with this being a big rugby weekend...I'll try.

On Monday I'm going to play a bit of music with a couple of friends, and it'll be the first time in a long time that I've played out in public. I should be alright though. I've been wanting to do this for ages and I've even been doing a bit of practice, I've noticed that I'm forgetting some song words here and there, I don't know if it's the drugs I'm on or old age but I might have to bring some cheat sheets.
The pub we're heading for is a gem of a spot, there's not many like it left and I hope it never changes or modernises. It's in a little spot called Ballyagran, which is basically a crossroads about five miles out of town. The owner, Billy, I've known for years and I'm hoping he'll be lashing out the guitar as well.

There's too much of what I call 'tradition' being lost these days. I'm pretty sure that every generation has said that but I'm coming from a different angle. All the things that I like are pretty organic, like music played on acoustic instruments and food cooked over flame. I know the world evolves and I'm as likely to use a microwave as the next person but I think we're coming close to the end of the line. When people stooped playing acoustic guitars in the 60's they picked up electrics, and the same with all the other instruments, and the fire has been replaced with microwaves and hyper grills and home espresso machines. But then the electric guitar or the keyboard has been replaced by the mp3 player, the d.j. mixing console and a guitar video game. The microwave has been stumped by the low cost of take-away food from all over the world, people can't cook anymore and we're heading for a generation that won't be able to play an instrument at a party for a bit of fun.

I went down to the river for a look the other day because the trout season has just opened and I didn't see a single soul fishing. My wife and daughter brought me to a local beauty spot on Sunday and even though there were twenty cars there there was only twenty two people.(yeah I know;I am that sad that I counted) All the people that were there jumped out of the car, walked their dog up and down the path for ten minutes and left without stopping once to look at the beautiful lake and fine hills around it.

So what I mean is, there's a lot of change in the world and if we're not careful we'll change once too often and completely leave the past behind. Music will always evolve, but without musicians to create it and play it, it will just turn into white noise. People will eat what they like but soon the distance between the source of the food and the meal will be too great and all we will have is generic protein biscuits. Dogs will always need exercise and people with hunched shoulders will drag them on a lead but some day we will never hear the word 'hello' again and the distance between us will get greater and our eyes might never look up at the wonderful world around us.

Some people make me mad

I went out today on my power chair on my own. This was the first time I did that, just me and my chair and the radio on my mobile phone. I'm not really supposed to go out alone but enough people know me in this town that I'm fairly sure that if I got in some difficulty there would be somebody to throw a blanket on me or get help or something. It was cold but dry.

Coasting around the town was fun, what was even funnier was the tussle I had with an oil truck. This idiot cut right across me and blocked the only ramp onto the footpath, so I wheeled in front of him and stopped so he couldn't go forwards anymore and made him back up out of my way. I never did like bad drivers.

Another thing I don't like is people who find the most pathetic reason to moan and whinge and make out that they have life so bad and everyone else has it good. I met a gem just like this in hospital last week. I know that people cope differently with problems and that it's not really my place to judge but this guy got up my nose.

He was in for one night for a check up on one or other of his innards that was playing up and we got talking about sport. I asked him what he was in for and he began. Every year he had to come to hospital for one night to get himself checked up, for a condition that could never do him any harm but did mean that he couldn't drink. He explained to me that his life was destroyed since getting ill and found it very hard to cope. Of course I had to ask how much he drank before he got this condition and he said 'never touched the stuff'... This is a quick immediate recap, his life is destroyed because he couldn't drink, which he never did anyway, and had to come to hospital one night a year for a mild condition that at worse would mean he might have to take a tablet every day. Now I don't want to sound like a moaner or anything but I found that a bit hard to take.

I really felt like exploding at him and pointing out that there are worse things in the world that could have 'destroyed his life' and he has kind of got off lightly but I just sat there in silence as he complained and moaned that he could never plan a holiday on that week every year because he had to come in for a night, and how he has to loose a days pay and had no way of claiming it back, or if they do put him on the tablet every day how this could upset his day and his routine, and everyone around him felt sorry for him because he has to go to hospital one night a year.

Yes I sat there in silence while he told me that this was the second year he came in and the food was getting worse and the nurses were not helping him with anything, even though he could have probably lined out for Shannon first team on the wing that weekend.
(Just a quick byline; the food in Cork University Hospital is great, and I'm qualified to know.)
Yep this guy waffled on for three hours, yes three hours about how bad it was and all the time I just sat in my wheelchair and said almost nothing.


The ward I was in saw 15 patients in the five days, I was the only one who stayed the full five, I get to meet a lot of people and I like that, and that's why I sat there in silence. Eventually we were joined in our chat by other patients as they returned from treatments or physio or whatever. The first was a guy I mentioned in a previous blog, he explained that he had less that two years to live, and had a smile on his face all the time. Next up was my deaf and dumb friend who kept us all smiling, then was a man who had early onset altzimers and shook our hand and told us how nice it was to meet us...you can see where this one goes by now. All the patients came in and each one with their own set of problems that they never seemed to complain about. At this stage my new room mate was onto me and tried to make an exit but he found a seventeen stone thug in his way, me. There was no way he was going to be left wallow in self pity in the quiet of his bed, no way. I told him about what was wrong with me, even though he never asked. After that I told him about some other friends of mine that I meet in hospital, the 28 year old who had a massive stroke and wasn't found for three days, the 22 year old who carries an oxygen bottle with her everywhere because her cystic fibrosis is so bad, the many brave people who have to come for hours and hours of dialysis three or four days a week but carry on with their lives without so much as a mention of it, all the time knowing that if they do get picked for a new kidney that someone has to have died to give them back their life.

I didn't shove this information down his throat, I just steered the conversation in the right direction. I didn't want to make him feel guilty or sorry for anyone, I just wanted him to have a look at what happens in the world outside of his little box.

The next morning he wished us all well and hoped we get better and off he went for a year. I don't know if our chat will ever change him but it changed me, the next time I meet someone like that I won't sit in silence, I'll just leave them alone to wallow in their own self pity and I'll talk to people who nave a great outlook on life and live for today, like all my friends do.

even the stupid can do stupid things

Here I am back in the land of normal folk. My little trip to hospital this month didn't throw up many surprises. The doctor has given me a new drug to take, basically it's to stop the other drugs he gave me doing me any harm, which I find a bit odd but he's the one with the education in healing people so I suppose I should do as he says, which isn't something I'm good at.

Yesterday was a good example of that. My daughter wanted to go on a shopping trip to Limerick so I thought the trip out would do me good. Now I'm the only person I know that needs to recover after coming out of hospital, having somebody Else's' antibodies pumped into me for five days kind of takes it out of me a bit, so the doctor always says to take it easy for a week. My idea of taking it easy is not exactly everybody Else's' so I thought a trip into the city would do just fine. Normally yes, anyone with a modicum of sense couldn't see a trip like that as anyway harmful and neither did I. I thought it would be such a relaxing trip that I decided that I'd leave my wheelchair at home and rely on my walking stick. This was not a good idea.

My plan was to park up and go for coffee with my wife while my daughter and her friends shopped. I guessed it couldn't be far between the car park and the lifts, and then not far from the lifts to a coffee shop so a walk of less than 200 yards was what I was guessing and I was right. We parked, I walked a bit and then sat for coffee and was thinking about lunch.

Sadly though this is where my plan started to go wrong, what I got was not anything related to a cup of coffee so I reckoned if they couldn't get a cup of coffee right they were unlikely to get anything else right and I threw a sulk and wanted to go someplace else. After a bit that's just what we did and this of course was going to add to my walking.

The second coffee shop wasn't far from where we parked and any able bodied citizen would have got there in less that two minutes, but it took me nearly ten, of course no amount of telling me that I was doing more harm than good was going to stop me. The coffee was good in coffee shop number two but the food didn't look great so again the toys were well and truly thrown and I had to go someplace else, of course I did because an award wining coffee shop in Limerick wasn't going to do it for this blogger.

There was about fifty yards to walk from the car to the comfort of a top class burger joint in Limerick and it was pure torture, I wouldn't give up, no way. I leaned on my walking stick so much it was almost bent in two and my walk looked like a demented duck with a limp. Lunch was good, I had a smokestack burger with chili fries and good coffee.

Now where has this left me. Well last night I was so uncomfortable that I couldn't sleep. I finally nodded off in front of the telly watching the winter Olympics and messaging a good friend on facebook. When I woke up I couldn't walk at all and it took me an hour or so to get going. I've spent the day in pain and I really feel like an idiot because I could have so easily ended up back in hospital.

On the plus side, my good friend and I managed to write a song while messaging on facebook, the recording will be posted. But best of all was this morning while I was lying around feeling sorry for myself, having gone back to bed, my daughter brought me breakfast in bed and thanked me for coming with her to Limerick, told me how well I'd done with my walking and reminded me that that was the first time I'd walked out in public since June last year which never occurred to me. I was so wrapped up in being a martyr that I'd forgotten that this was another first for me and maybe I should pay more attention to what my little girl says more often.

I'm still here

They say when life throws lemons then you should make lemonade, and I couldn't agree more.

Here I am in hospital and I made it through 'till Monday. I really should have come in on Saturday and one of my doctors was none too pleased, I think she was just in a bad mood because me waiting 'till Monday doesn't create any more work for her, she is a great doctor though.

A friend of mine has let me use her broadband dongle while she's gone for an MRI scan and that's why I can post this blog, I think I'll invest in one of them for the next time I'm in here.

It's been a pretty uneventful few days as hospitals go but there are some really nice guys on the ward. There's a guy in the bed opposite who is deaf and dumb and has managed to keep us laughing all the time with his antics, from getting on one knee and pretend proposing to one of the nurses to pretending to be asleep when the porter comes to get him for physio, and then popping his head out from under the blankets with a huge grin on his face when the porter gives up and goes. He has an amazing ability to communicate without words or sound. He really loves life, every minute of it and shows it in every movement he makes.

The guy in the next bed to me told me he has incurable cancer and has been given 12 to 20 months to live. He has a constant smile on his face and is looking forward to filling his days as much as possible with the things that interest him. He also told me that he wants to die while attending a German s and m party, but hey I'm not here to judge, but that's what keeps him smiling. He asked the doctor last night for a prescription for Viagra as he intends on using a lot of it, fair play to him.

The world is full of all kinds of great people and each one is an integral pert of the reason this world is such a great place. My two room buddies have kept me smiling for the past few days and I hope I've done my bit to make them smile as well.

Now where's my lemonade I'm thirsty.

It's the little things

It's Sunday and my entire body is very angry at me, my own fault of course. I'm sitting in front of the TV and I'm just about able to type. My arms have just about given up and every thing from mt fingertips to my shoulder is either twitching or numb or going into spasms.

I've just had to move my laptop because in the time it took me to type the previous paragraph I've been reduced to one finger on each hand typing and I can feel my left hand is about to give up totally. From now untill tomorow at the hospital I will be totally reliant on the people around me to do everything for me, that's how quick I can go from being able to make a sandwich to not.

I of course won't be writing a blog untill Friday so everybody have a good week and if you need me ring or text, these are the little things that cheer me up no end.

I'm still here,..and there's rugby on TV today

I couldn't sleep last night, it happens a lot but I could have done with a good night's sleep last night. My whole body was twitching and going into spasms for hours, until five o clock, when I just gave up and got up and watched a bit of telly where of course I immediately fell asleep on the couch. I was woken at nine by my wife and I was too stiff and sore to move so I stayed put until eleven and I really wish I hadn't because right now I feel like I slept in a washing machine.I used to be able to go a long time with very little sleep but now I need 8 hours or I really get messed up.

Right now my hands have almost stopped working and I'm finding it hard to pick anything up or even type. My legs are pretty much useless so I'm in the power chair all day. It's a clever piece of kit, it can turn on it's own axis and fit through every door in the house, I'd be lost without it because my arms aren't strong enough to push my wheelchair.

Today I'll be parked in front of the TV watching the opening 6 nations matches and shouting at the commentators for getting it wrong. Ireland have a Italy in Croke Park and England are hosting Wales. I just hope there's going to be some good rugby played because this is one of the reasons I haven't gone to hospital yet, so come on ye gods of rugby, don't let me down.

Here I am, not in hospital

I know I should be heading off to my city residence right now but I'm really not going to untill Monday. Today my toes have gone numb and my hands are starting to cramp up, typing is tough today. I can just about stand and I can take about four steps and I fall, that bit isn't so nice because it takes my ages to stand up again. I'll be using my powered chair for most of the day around the house (the Invacare Typhoon2, the Rolls Royce of power chairs). I'm really luckey to have it, my occupational therapist sorted it out for me and it fits like a glove. Before I got ill I never knew that wheelchairs and power chairs had to be custom fitted or you could end up with a whole load of other problems from sitting wrong all day.

Coming down the stairs was tricky, it was a case of holding on to the banister for dear life and each step nice and slowly. It's funny the way you adapt when something like this happens, all around the house I have what I call anchor points, these aren't special fixings in the wall to adapt the home or anything, they're just places and things that I can lean on or grab onto to stop me falling. I do this now without thinking and when I'm at my most mobile I can scoot around the house and nobody could tell there was anything wrong, but take me out of my comfort zone and I'm as fragile as a baby deer, ermmm I ment as fragile as a wounded stag, that sounds a lot better.

I guess everyone has their little anchors around the house, your knee on the edge of a couch or your elbow on the sideboard, your shoulder against the door frame or your bum on the edge of the kitchen table. I can map mine out in my head and I reckon I could find them in the dark because I depend on them so much, just like all the people in my life I care about when I reach out I know they'll be right there.

New ward for the patient

Just as I was about to ring the hospital this morning they rang me. I'd like to say it was a kind of karma thing but I'd forgoten that they were due to ring me today to let me know if they have a bed for me on monday, and they have. My body is shutting down a bit more every hour so the race is on, will I make it untill monday or will I be admitted through A&E sometime over the weekend.

The doctors tell me that if I feel bad to go straight to A&E but I think this time I'll ride it out and see how far I can push it. I'm going to be admitted to a new ward so nobody there will know me well enough to give me a hard time for waiting untill monday, if I was on my usuall ward they wouldn't stop giving out to me for the duration but that's because they want what's best for me. If I'm right, and I never am, then if I do as little as possible over the weekend then by monday I should still be tweleve hours from total quadraplegia.

Now; anyone who knows me will know that I don't take things like this lightly and there must be some logic in my plan and here it is. If I go in before monday I'll be sleeping on a trolley in A&E untill monday, not that I mind because I've slept in worse places but I won't get my juice untill monday anyway. And of course there's the rugby at the weekend, I really don't want to inflict me and my constant commentary on the poor patients of CUH, in fairness they're sick enough without me making them worse.

So here's the deal, I'm going to try and make it untill monday and if I can still type over the weekend I'll let you know how it's going, and you guy's have to ring or text a friend that you havn't spoken to in ages but keep meaning to just to see how they are and then start a blog about how that makes you feel, and I'll look forward to reading them.

Here it comes again

Just when I was getting used to being able to walk my little illness stuck it's leg out and tripped me up. I know that this is what I call my failure week but it still takes me by surprise. This morning I walked down stairs and made tea. Usuall checks to my person, and nothing was wrong, and by lunchtime I was still okay and carried on. In the last three hours I've gone from walking around the house with a cane to being back in my wheelchair. My hands are starting to go numb and my feet are feeling cold.

In the morning I'll ring the hospital and tell them I'm on the way. They might even have a bed ready for me this time, but I don't mind sleeping in A&E, all I really want is my IvIg and I'm happy. It'll be nice to see the hospital gang again and see how everyone is doing, and of course it'll be nice to give Adel a hard time for not getting my coffee right.

I think I'm lucky really that I can just pop to hospital for my temporary cure, I see so many people in there that get ill and stay ill. So tonight I'll check that my hospital bag has all the things I need in it and tomorow or friday I'll head for my city home for a bit and relax.

The one thing that's bugging me though is that the 6 nations starts this week and I won't be able to use my usuall colourfull language while I watch it, I'll have to be a bit more polite or Adel might just throw the coffee over me

A funny thing happened on the ward.

Now I don't think I know anyone who enjoys going to hospital but there are some things that make the whole experience a bit more fun. I had such a moment recently.

The hospital I attend is Cork University Hospital so it's fair to assume there's going to be student doctors and nurses on every ward. I suffer from CIDP and that's pretty rare and because it is so rare I get my fair share of medical students that want to interview me or do a physical exam or whatever, any of which I have no problem with. One of the effects of my illness is that my reflex's don't really work, I think my doctor said they were about 10% of what they should be.

One day I was approached by two students who politely asked about my illness and if they could do a physical, to which I gladly agreed. They did all the usual stuff like 'squeeze my fingers' and 'lift this leg' 'lift that arm'. Last of all was the reflex test so I told them that mine were not what they should be. I lay back and the student hit just below my kneecap and nothing so he hit me again even harder to which his friend said 'can you get them?' With this the student said with a straight face 'hang on' and then blew on the end of his patella hammer and hit me even harder. Still nothing so he polished the end of the hammer on his white coat and hit me even harder. Then in shock he said 'I'm really sorry, did that hurt'. I was too busy laughing to care so I just said 'Did you really think that blowing and polishing the hammer was going to make a difference'

The student went red because he really didn't realise he had done that until it was pointed out to him. I've met that same student a lot in hospital and a lot more besides and every time I tell them to bring a patella hammer and every time I wait for one of them to do the magic blow on the end of it. Maybe one of them will find a cure for some awful illness or win a Nobel prize, if they do I'll be first in line to tell this story.

A day in the life

Now, I've decided to write what a day is like for me. I should point out that it might not be very interesting for most people what I do in a day but there are some people who ask me what I do and how I cope, if that's you then I hope this answers those questions.

My day doesn't start in the morning like everyone else, no my day starts the night before when I go to bed. That might not make sense but to explain I need to make sure I get a good night sleep or the following 24 hours are just a waste.

My clothes must be where I can reach them without getting off the bed and my walking stick or crutch on my right hand. I always brush my teeth within an inch of their lives. I lie down and then the twitching starts, not the kind that involves running around the countryside with a camera and a pair of binoculars. Every muscle in my legs and arms start to twitch and spasm and cramp without any warning. The only thing I can do is relax and try to drift off. If it's really bad (like last night) I can lie awake for hours and maybe get no sleep at all but that is very rare.

In the morning I wake and sometimes I forget that I can move now and it takes a minute for me to come to my senses, sometimes I forget that I've got CIDP and I get a kind of 'let myself fall for that old chestnut' feeling. I throw my legs out of the bed and get dressed in a sitting position. Then I have that deep breath moment and try to stand, most days I can but a very odd time I can't, I never know until I try. If I can stand then I reach for my cane and head for my next challenge, the stairs. Right hand on the banister left hand on the wall, the stick just gets thrown to the bottom. One step at a time slowly and concentrating on balance all the time to avoid failure, if I do fail on the stairs I go from step to step on my backside but that doesn't happen too often. My wheelchair is always at the bottom of the stairs facing me. It takes about 50 seconds to do the 11 steps. At the bottom I hop in the wheelchair and decide if I need it to get to the kitchen or not, more often than not I use the wheelchair and get to the kitchen, that's where the food is.

The kitchen is full of hazards for me. First off is the kettle, tea or coffee have to be made so if the kettle comes out of my hand the boiling water flows away from me, so I keep the spout as far from me as possible. I normally have a cereal for breakfast even though I love to cook I can't risk cooking anything when there's nobody in the house in case I fall or have a sudden relapse.

After breakfast I head for the sitting room and put the news on TV and turn on my laptop and read all the papers while dashing in and out of various social networks. That's where I stay until lunchtime. Sometimes people call but by and large I'm on my own.

At quarter to one I head back to the kitchen and make a couple of sandwiches for Louise (my wife) and me. I try to be as creative as possible and sometimes this involves cooking but that's okay because I know that if something was to happen then Louise will be here any minute. Lunch is rushed and after I go back to the sitting room and sit with the laptop and TV until Lauren (my daughter) comes in from school.
That's normally around half four or so. That's when I can come to life a bit more, when there is someone else in the house I feel more confident walking around because if I fall there is some one there to get help.

With Lauren in the house, or at least near the house I can crack on with dinner. I really love to cook and I always try to have a meal ready for the three of us at quarter to six when Lou walks in the door. After that I'm normally shattered but lately we've started going for a ramble up the town in the evening, it's nice to get out in the motor chair and see something else other than the four walls at home. When we come back from our 'walk', I try to catch up with any e-mails and bits and pieces that I've gotten during the day.

Next up is the biggest challenge, the stairs again and a shower before bed. Again I have to wait until there is someone in the house who could help me if I was to fall in the shower. All of this can take up to an hour because every step of the way and everything I reach for has to have total concentration, it's not always that long but when I'm on the edge of relapsing it would take an hour and shaving would be almost impossible.

I hope that this rather disjointed blog lets people know what my day is like and what it must be like for any number of people that have an illness or a disability.


I don't want anyone to think that my life is some kind of chore or that I'm not happy, I'm very happy with my life because I've seen and experienced a lot worse and coped just fine in my little bashed up mind. I've always said that you can only play the hand of cards that you're dealt and I'm happy with my lot.

In just one day.

In just one day I went from being able to cycle up a hill to not being able to cycle up a hill.

In just one day I went from being able to climb a stairs to not being able to climb a stairs.

In just one day I went from being able to pick up a cup to not being able to pick up a cup.

In just one day I went from being able to walk to not being able to walk.

All of these things didn't really happen in one day, they all happened over weeks and months. I went from a healthy and happy 40 year old to a quadriplegic in seven months but I remember the days that I had to call it quits on each of the actions that I could do one day and not the next.

I went for a cycle around Brighton on a fine January day and the next day I couldn't cycle at all. I haven't ridden a bike since. I wasn't feeling well up to that point and I didn't know it could have been my last bike ride, maybe if I knew I would have gone somewhere nicer that the seafront in Brighton.

I remember trying to climb a stairs and having to use the banister to pull myself up and the side wall to balance. That wasn't long after the cycle. I kind of guessed at that stage that there was something wrong with me and it wasn't just a bit of mild fatigue. It crept up on me and I thought 'hang on, I was able to climb that stairs yesterday without using the wall and the day before that without the banister'
I think I sat in the flat and got a bit scared. I hate stairs now, and steps.

I was having breakfast with my daughter and I couldn't pick up the cup to drink my tea. Mostly I'm a coffee in the morning type of man but this was tea. I sat at the table wondering how on earth I was going to do this, so I anchored my forearm on the edge of the table and managed to get enough leverage to get the cup to my mouth. From then on I drank everything through a straw. I wish I had made a nice fresh pot of coffee that day. I do now as often as I can.

One morning early I got off the couch I had been sleeping on and just about got to my feet. I took three steps to the hallway and called out for my daughter to get out of bed.Then I hit the floor, catching my arm on a radiator on the way down and ended up on the floor wondering how I was going to get up. I had fallen a lot in the previous months and every time it got harder and harder to get up. This time I didn't get up. I couldn't stand and I couldn't walk, my legs just gave up. They'd been giving up for a long time but this time they said 'nope, not another step'.

I lay there for quite a while and wasn't really sure how to react, maybe I was in shock. All I knew for sure was that my walks in the countryside were probably well behind me.

I didn't know then what kind of profound affect all this would have on me and every day I learn a bit more. I can walk a little bit now and pick up a mug of coffee and just about manage a stairs, but every thing I do I try to savour the moment because I never know if I'll be able to do it again.

The view from my room

I've spent far too much time in hospital but it's not the worst place in the world. I've started calling Curk University Hospital my city residence and the room I'm given every time I call the penthouse suite. I'm kind of luckey and I allways seem to get a bed by the window and this is what I see.

It's not a bad view as hospital views go, most of the rest of this side only sees another part of the hospital but this room is at the very top and facing south. All day I watch the planes land and take off from Cork airport. It's a lot busier than I ever thought, big planes, little planes, cargo planes, helicopters, it's a great spot for a plane spotter. I really don't know one plane from another except the 737's that carried me so many times to and from England.

The hospital is on the edge of the city so I see a lot of fields and a few houses. There was a lot of cattle out grazing up untill winter when they must have been brought into winter housing. At night the houses light up and give a warm glow to the darkness.

There's a woodland between the last house and the fields which must act as a windbreak. I like scampring around woods and forests so if I can ever get some power into my legs I might head up there and see what the hospital looks like from up there.

To the south west there are even more fields but they stretch out as far as I can see like a patchwork quilt. As the winter came in they changed colour from greens and yellows to browns and greys. It's was like watching nature change pallets and start on a new canvase. When I couldn't move I used to stare off into the distance for hours on end and wonder what was waiting for me in the distance.

I like winter to be cold and harsh and unforgiving because I've allways believed that the snow and ice has a sort of clensing effect on the countryside. This winter has been hard, Cork City flooded and the snow came in heavy and hard for a few weeks. There was a lot of snowmen looking back at me from those fields.

This year I'll keep going to hospital and still look out that window into the distance and some day I'll head out there with my dog and a good coat, turn my face into the wind and walk through those fields.

The things I missed, I think.

It's hard to think about the things you'd miss if they were taken away because when we have all the things we need on a day to day basis we have no sense of perspective about what we should miss as opposed what we would really miss, if you kind of get me.

This little gem sort of jumped at me one day in hospital. I was lying on my bed unable to move anything from my kneck down and I thought 'what is the one thing I miss more than anything else?' Now my immediate reply should have been 'playing guitar' but that was so far back in my mind at that stage that I'd almost forgotton that it was something I did every day. And of course you'd think I should matbe say human contact but being a quadraplecic, trust me, you get all kinds of human contact that you havn't had since you were a baby. So as I lay there with the sun shining in the window I began to examine my senses. I could taste everything even though I had to be fed all the time. I could see and hear perfectly so DVD's and CD's were in plenty supply as was TV and other abbrievated electrical goods. Having spent so long in a hospital ward with five other menI was absolutely sure that my sense of smell wasn't affected, oh boy!!

That just left my sense of touch but I couldn't really test that because I couldn't move. It wasn't untill I came out of hospital that it dawned on me what I missed most.

A friend of mine called to the house and insisted that he take me out for a bit of a wander down the town, I hadn't done this in months. So I loaded into my wheelchair and off we went. Half way to our destination the skies opened and my friend cursed the heavens and the rain poured.

That's when I realised what I really missed, the feeling of rain on my face. Normally we shield against it and cover ourselves and run from it but this time I just wanted to feel the thousands of prickly drops splash across my face and hands. It's maybe a funny thing to miss but I didn't know I missed it untill that moment, I didn't know what I really missed untill it was brought back to me. I think what I'm trying to say is that it's never the flatscreen TV or the MP3 phone with camera and optional web browser that we should appreciate but the smallest drop of rain that made this blogger feel human again

So it's one year on since I first thought that I might be ill. I wasn't going to reflect on it until someone at the hospital said that it's good to look back so I could appreciate my improvement. I'm not really sure what he meant because I had only just met him and he didn't know whether I'd improved or not, I think he was on a lot of drugs.

I've always tried to keep myself fit without ever going down the 'body-beautiful' route. Sport has always been important to me and even though I never did win a 6 nations grand slam I did my small bit pushing around the scrums of different clubs week in week out
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For me life has always been about today so it's not like I thought it would never happen to me but it just wouldn't happen today. Then of course it did happen, but over six or so months. It started with my legs going weak and feeling a bit tingly, the doctor said I might be run down. Next I was having trouble walking up the stairs and hills, the doctor said it might be something rheumatic. Three months in and my walk looked like I had on wooden legs and the doctor sent me to a neurologist. A month later and my arms were weak and my fingers wouldn't work.

Anyone who knows me knows that music means more to me than anything so me not able to play my guitar is about as bad as things could get for me. I remember playing a gig in Horsham (support to Seth Lakeman) and I had a feeling somewhere inside that this was the last gig I was going to play for a while. My legs could barely hold me up, my back ached because of my hunched walk, and I could just about hold down the chords on the guitar. Afterwards I hid in a backroom and was so physically and mentally wrecked that I just lay on the floor and really wanted to die there and then, not commit suicide you understand but just die and then the pain would stop and the mental torture would just go away. At this stage the doctors still had no clue what the hell was wrong with me.

All the time this was going on I had an endless stream of people who were self styled net-doctors, this resulted with me being told on a daily basis that I could have any number of horrible things wrong with me. I'm sure all these people were trying to help but really they didn't, not one bit, in fact they only succeeded in scaring me half to death every time I was told I could be dead in a few months.

By the time the doctors finally figured out everything I was unable to move anything from my kneck down, I had full feeling and sensation but couldn't move anything. I was not happy.

The condition I have is called C.I.D.P. and I'm not going to bore you with what all that means and the symptoms because you can just google it and find out.

Now one year on I don't feel too bad. After treatment I can walk a bit and best of all I can play guitar again. I have monthly relapses and need to go back to hospital every time for five or so days.

A friend of mine asked me if I felt cheated and the answer is no. I refuse to grouse or complain about my illness and I try to keep my day as full as possible. I kind of see it as a way of re-focusing my life and doing new things that I could never have done before. I want to do a degree and I want to write a lot more, I want to play lots more gigs and see a lot more shows. I don't believe in a god or an afterlife so the one life I have been given I'm going to enjoy just like always did and live for today because you never know what the doctor might say tomorrow